Ciguatera support group & info exhange

This blog is a place for people with ciguatera to share stories and information. It is anonymous and free. Please send in comments if you have info you'd like to post, or questions. The goal is to make our recoveries better by exchanging helpful advice, and ultimately to foster better research on ciguatera.

Monday, December 13, 2010

Ciguatera flare ups can be really frightening, especially if tachycardia kicks in because when your heart is pounding it feels like something is very, very wrong. When the symptoms flare up, I get nervous that I've eaten more of it and it could be fatal, as it becomes worse with each time one gets it. Unlikely for sure, but not a pleasant thing to know could happen.

Last week I was coming home from a business trip, was quite tired from a busy week in a foreign country, hadn't quite eaten enough or stayed hydrated enough the morning of the flight. My fingertips were like raisins- totally shriveled for no reason- which was a red flag that the toxin was acting up. While switching planes, I began to feel worse despite drinking lots of electrolyte fluids and water (always travel with powder packets now). I boarded the next plane but got off before it took off (never done that before.. it was a bit dramatic)- I suddenly felt dizzy, then turned red with a pounding heart. They called the paramedics and by then I started shaking uncontrollably. I took a sedative. The paramedics said everything seemed okay except my racing heart, and that I was just having a panic attack. I missed my flight and sat at this airport alone for a few hours until I felt stable enough to fly home. Throughout the day I had lots of odd muscle and vascular pains in my limbs and chest/abdomen, including twitches. And of course my persistent nerve pains.

It is possible that I just had anxiety/panic, but it truly felt like something else was going on. A primary theory of how chronic ciguatera works is that it sits in the body's fatty tissue, then can become 'reactivated' into the blood stream when the lipid metabolism is active. Things such as exercise, stress, alcohol, caffeine, and nuts can do this. I had a small amount of several of those things in the preceding 24 hours, so I wonder if it altogether got my toxin going. Of course I'll never know but it sure felt uncomfortable and as if something was happening in my systems. Since then I've felt okay but very, very tired for the past week since this event and my eyesight has been irritated, something that's been better and worse in waves since I got ciguatera.

As always, I'm thankful for the degree of healthiness that I do have. But remain frustrated and tired of dealing with this annoying, and sometimes scary, condition.

One new observation that I made this day: I had successive nerve pains in symmetrical spots in the inside of my knees within the same hour. Usually the pains seem more randomly placed/timed. This argues against the 'it's circulating in your bloodstream' theory and more along the lines of it stemming from the spinal cord. I saw a comment online that someone in Hawaii believes it accumulates in the spinal cord fluid and can't get out. Hmmm. Unfortunately, such a mystery.

Monday, November 15, 2010

Just by way of updates... earlier in November I was having a bad flare up of nerve pain (shocks, migrating around body all over) and stomach/chest pains so strong I would double over. It was at home, and while traveling. Then the past week, while in Europe and Latin America on business, I had almost none. Though I did have terrible jet lag and then horrible sinus problems- congestion, headache for 3 days. I had a CT scan today to see if there's anything to be done about the sinus problems. It is weird how the intensity of the nerve/gastro/chest symptoms changes. Can't track it to stress, travel, etc.; the levels seem random.

I tried Gabapentin for a month or so but stopped it because it didn't make me feel all that great but it did cause dizziness and possibly some bad headaches. Sure am at a loss of what to try next- maybe Symbicort or Lyrica as suggested by two others I've connected with.

Tuesday, October 26, 2010

It'll be two years in December. Still got it. Got brave and went on some international business trips this fall, first time left the country since getting this in Thailand. Went to a city at high altitude and did fine though was worried since I've had some bad reactions. One one trip had a problem with chest pain but it went away after several hours.

Symptoms I still have: nerve pain, daily, all over at random spots/times. Head pressure still won't normalize. Occasional chest/abdominal pain. Wrinkled fingertips when cold or pressure applied. Headaches, muscle pain.

Been trying Gabapentin for the nerve pain- doesn't seem to help much if at all. Been on a nasal steroid to try to normalize ear pressure- also not helping. Might repeat some imaging soon.

Anyone out there with a story to share? It's a lonely condition, that's for sure. Connected with a friend of friend who had it and even found a dr in New York who's seen it before. He told her eventually it 'breaks away' from the nervous system- in her case under a year.

Wednesday, April 14, 2010

So I've had weird visual disturbances for a year and four months since I got ciguatera, and finally found out today what it's called: palinopsia. I see too many light shadows all the time making it hard to focus. Doctors call it overactive after-images. Very little is known about the condition, other than it rarely gets better and like ciguatera-caused nerve pain, is caused by over active neuron signals firing off. Great. Anyone else have this too?

Sunday, April 4, 2010

I have been doing better overall with ciguatera but must avoid the trigger foods or symptoms quickly return. Luckily my gastro problems almost fully normalized 11 months into it. But if I eat so much as a piece of chocolate, cup of decaf coffee, or a few nuts, I have nerve pain for days. In January I ate lots of those foods and some alcohol- and started waking up with numb feet and hands plus visual disturbances again. Scary! But after stopping the foods it got better within a month.

I went to Hawaii last week and snorkeled on a reef that has ciguatera. It was odd to see the lovely triggerfish and know they may be carrying it. And to be so close to the toxin that has caused so much heartache.

Monday, September 28, 2009

Next month it'll be a year that I've had ciguatera. Luckily the intensity of my symptoms has subsided, but the toxin is still quite present and active.

I have nerve pain all over my body every day. It comes in sharp pricks for a second or two in random spots; also spasms, tingling, itchiness, etc. Frustrating. I tried to phase back in some of the foods to avoid without success. I don't know what I accidently had last week but I'm having a rough flare-up with the nerve pain. It's getting colder, so I hope the cold is not what exacerbating it because if so it's going to be a long winter.

Fingers crossed, my gastrointestinal pain/discomfort has been a LOT better after on/off problems until October. I truly hope this holds because that's been the hardest symptom to manage.

I finally got a colonoscopy/endoscopy which came back normal- a relief after so many months of scary GI pain and feelings. But NOT a fun process at all.

Aerobic exercise seems to help a lot. Thank heavens, because the research says it makes it worse for some people. I've taken up salsa dancing a few nights a week and when I go for an hour or two dancing hard- sweaty head to toe- I feel no pain at all and often the next day is smoother than usual.

I am concerned about getting H1N1, because we have no idea if/how it might react with ciguatera. I'd like to get the vaccine as soon as I can. I got the seasonal and pneumonia vaccines already. I got a bad cold and it hit hard; I lost weight and it lasted for 2 1/2 weeks. I think it's possible that my immune system is affected by this, but who knows.